My Journey with Scalp Acne Keloids

For as long as I can remember, I’ve carried a secret with me, one that has caused me deep shame, frustration, and, quite honestly, a tremendous amount of pain. It’s something I’ve battled for decades, yet until recently, I hadn’t even fully understood what I was fighting against. This secret is a condition known as scalp acne keloids—a term I had never heard before, but one that has shaped so much of my life.

For years, my scalp was a source of constant torment. It wasn’t just the physical pain, though that was bad enough. The emotional toll it took on my self-esteem was even more devastating. I spent countless nights lying awake, my head throbbing from the inflammation, my pillow stained with blood from where my scalp had cracked open during a particularly bad flare-up. The itching was relentless, driving me to the point of despair as I tried to resist the urge to scratch, knowing it would only make things worse. But the worst part of all was the secrecy—the feeling that I couldn’t share this with anyone, not even those closest to me.

The Early Days: A Mystery with No Name

My journey with scalp acne keloids began in my early twenties, though I didn’t know it at the time. Back then, it was just a few bumps on my scalp, an occasional itch that I didn’t think much of. But as the years went on, the bumps multiplied and grew larger, the itching became unbearable, and my hair started to fall out in patches. It was terrifying, but I was too ashamed to talk about it, even to my doctor.

Finally, in my mid-twenties, I gathered the courage to visit a dermatologist. I was desperate for answers, hoping that whatever was happening to me could be easily fixed with a prescription or two. But the visit only left me feeling more confused and frustrated. The dermatologist didn’t give me a formal diagnosis; instead, she casually told me to wash my hair with tar shampoo and sent me on my way. I remember feeling dismissed, as though my concerns weren’t valid. I tried the tar shampoo, as she suggested, but it did nothing to alleviate my symptoms. The bumps continued to grow, my scalp became more irritated, and my hair loss worsened.

Decades of Struggle and Shame

For the next two decades, I continued to battle this mysterious condition on my own. I tried every over-the-counter remedy I could find, from medicated shampoos to creams and ointments, but nothing worked. I avoided hair salons out of fear that the stylist would comment on the state of my scalp, and I became increasingly self-conscious about the patches of hair that were now missing. I started wearing wigs and weaves more often, hiding my scalp from the world, and even from myself.

The condition took a toll on my self-esteem. I felt unattractive and embarrassed, constantly worried that someone might notice the state of my scalp. It became something I was deeply ashamed of, and I carried that shame with me every day. The emotional weight of this condition was almost as unbearable as the physical symptoms.

Finally, the Courage to Seek Help

It wasn’t until recently, after years of suffering in silence, that I finally decided to seek help again. By this point, my scalp was in terrible shape. The bumps had multiplied, and the itching and pain were worse than ever. I knew I couldn’t go on like this, so I made an appointment with a dermatologist.

When I arrived at the dermatologist’s office, I was both hopeful and terrified. I didn’t know what to expect, but I knew I needed answers. After a brief examination, the physician assistant paused, her brow furrowed in concern. She admitted that she wasn’t entirely sure what was going on with my scalp and decided to bring in the doctor for a second opinion. That moment felt like a turning point—a validation of my concerns and a recognition that what I was experiencing was not normal.

The doctor’s examination was thorough, and after what felt like an eternity, she finally gave me a diagnosis: scalp acne keloids, along with a scalp infection and folliculitis. Hearing the words for the first time was both a relief and a shock. Relief because I finally had a name for what had been plaguing me for so long, and shock because the doctor didn’t mince words when she explained the severity of my condition.

The Diagnosis: Scalp Acne Keloids

Scalp acne keloids, as the doctor explained, is a chronic inflammatory condition that causes painful bumps on the scalp, which can lead to scarring and permanent hair loss. The condition is most common in people of African descent and can be exacerbated by factors such as tight hairstyles, poor scalp hygiene, and even certain hair products. In my case, the condition had progressed to the point where significant scarring had occurred, and the bumps had become so inflamed that they were prone to infection.

The doctor’s words hit me hard. She explained that while the condition could be managed, the damage to my scalp was irreversible. The scarring was so extensive that the affected areas would never grow hair again. This news was devastating. I had always known my scalp was in bad shape, but hearing that the damage was permanent was something I wasn’t prepared for.

A Treatment Plan: Hope Amidst the Heartache

Despite the grim news, the doctor outlined a treatment plan that offered some hope. The first step was to bring down the inflammation with a series of steroid injections directly into the affected areas of my scalp. This would be followed by a course of antibiotics to clear up the scalp infection, along with a special medicated shampoo to help manage the folliculitis. I was also prescribed a steroid cream and a topical solution to apply daily, which would help reduce the inflammation and prevent new bumps from forming.

The treatment plan was comprehensive, but it wasn’t a cure. The goal was to manage the condition, to reduce the symptoms and prevent further scarring. But the reality was that my scalp would never be the same. The doctor also mentioned that surgery was an option to remove the scar tissue, but it would be a major procedure, involving the removal of the damaged skin and possibly a skin graft to replace the lost tissue.

Processing the Diagnosis: A Rollercoaster of Emotions

Leaving the doctor’s office that day, I was overwhelmed with a mix of emotions. On one hand, I was relieved to finally have a diagnosis and a treatment plan. For the first time in decades, I felt like I was on a path toward managing this condition rather than being consumed by it. But on the other hand, I was devastated by the reality of my situation. The thought that my hair would never grow back in those areas was heartbreaking, and the prospect of undergoing major surgery was terrifying.

I spent the next few weeks processing the news. There were days when I felt hopeful, optimistic that the treatment would bring me some relief and allow me to regain some control over my scalp. But there were also days when I felt deeply depressed, mourning the loss of my hair and the damage that had been done. It was a lot to take in, and I found myself questioning whether I had the strength to go through with the treatment, let alone consider surgery.

The Impact on My Self-Esteem

This condition had been a source of shame for so long, and even with a diagnosis, those feelings didn’t just disappear overnight. For years, I had avoided looking at my scalp in the mirror, unwilling to confront the damage that had been done. But now, I had to face it head-on. I had to apply the topical solutions, massage the steroid cream into the affected areas, and sit through the painful injections.

Each step of the treatment was a reminder of how far this condition had progressed and how much it had affected my life. But it was also a reminder that I was finally doing something about it—that I was taking control of my health in a way I hadn’t before. It wasn’t easy, but it was necessary.

Small Victories: A New Beginning

As the weeks went by, I began to notice small improvements. The itching started to subside, and the inflammation began to decrease. I could sleep through the night without waking up to find my pillow stained with blood. My scalp was still far from perfect, but these small victories gave me hope. They were a sign that the treatment was working and that I was finally on the right path.

The Decision: To Surgery or Not?

One of the biggest decisions I now face is whether to go through with the surgery to remove the scar tissue. It’s a major procedure, and the thought of it is daunting. The doctor explained that the surgery would involve removing the damaged areas of my scalp, possibly requiring a skin graft to cover the exposed areas. It’s a complicated process, and there are risks involved, but it could potentially improve the appearance of my scalp and give me some peace of mind.

I’m still weighing my options. On one hand, the idea of getting rid of the scar tissue is appealing. It would be a way to put this chapter of my life behind me, to start fresh with a healthier scalp. But on the other hand, the thought of undergoing such an invasive procedure is terrifying. It’s not a decision I’m taking lightly, and I know I need to take the time to really think it through.

I’ve made an appointment for a consultation with a surgeon to discuss the procedure in more detail. I want to understand all the risks and benefits before making a final decision. It’s a big step, but it’s one I need to take in order to fully consider my options.

Moving Forward: A New Chapter in My Journey

As I move forward, I’m focusing on taking things one day at a time. I’m continuing with my treatment plan, staying on top of the injections, antibiotics, and topical solutions. I’m also making an effort to be kinder to myself, to recognize that this condition doesn’t define me and that I’m more than the scars on my scalp.

This journey has been long and difficult, but it has also been a learning experience. I’ve learned to advocate for myself, to push for answers when something doesn’t feel right. I’ve learned that it’s okay to ask for help, to seek out the expertise of professionals when you need it. And I’ve learned that self-care isn’t just about physical health—it’s about taking care of your emotional well-being, too.

A Message to Others: You Are Not Alone

If there’s one thing I want to convey through sharing my story, it’s that you are not alone. If you’re struggling with a condition like scalp acne keloids or anything else that causes you pain and embarrassment, know that there is help out there. It’s easy to feel isolated, to think that you’re the only one going through this, but that’s not true. There are others who understand what you’re going through, and there are doctors who can help.

Don’t be afraid to seek out that help. It took me decades to finally get the courage to see a dermatologist again, and I wish I had done it sooner. The road to diagnosis and treatment might be long and challenging, but it’s worth it to get the answers and the care you need.

Embracing My Journey

My journey with scalp acne keloids is far from over, but I’m finally on a path toward healing. I’m learning to live with this condition, to manage it, and to take care of myself in the process. It hasn’t been easy, but it’s a journey that has made me stronger and more resilient.

I’m still figuring out whether surgery is the right option for me, and I know there will be more challenges ahead. But for the first time in a long time, I feel like I’m in control. I’m no longer letting this condition dictate my life, and that feels like a victory in itself.

Thank you for taking the time to read my story. If you’re dealing with a similar condition or any other health issue, I hope my journey can offer some comfort and encouragement. Remember, you’re not alone, and there’s always hope, even in the most challenging situations.